Getting discouraged

I don't think my problem is related to pressure settings or anything like that. It is mask leaks, mouth breathing, and hose entanglement waking me up to a state of full wakefulness several times each night as I struggle to rearrange the equipment and get back to sleep. This kind of thing did not improve over time at all and actually got worse.

Friends I have talked to who don't suffer from these things have one thing in common: they don't move when they sleep. One is a back sleeper who just lays there like a log. Another sleeps on a couch and has no freedom of movement.

I have decided to try once more with an emphasis on getting equipment problems under control. It has become clear to me that heated tubes, humidification, APAP, soft nasal pillows etc don't change the fact that tossing and turning side sleepers are facing a tremendously difficult task compared to immobile back sleepers. I have ordered a hose management system (the HoseBuddy Plus or whatever the extra tall one is called) to keep the hose out of the bed. I may try a new mask if I can figure out one which would work better with an overhead hose management system than the Swift FX. And I may try a new, hopefully less itchy chinstrap than the Ruby-Style one I have now.

In the meantime I am going to sleep without CPAP as I did last night. I still felt terrible today, much worse than I did before starting therapy. I am guessing that is due to a sleep deficit created by 10 weeks of CPAP induced constant awakenings all night. At least getting out of bed and driving to work was not a catatonic chore this morning, though I did feel worse as the day dragged on. As I read in another thread, apnea may be hard on the body but CPAP equipment induced awakenings are much harder on the brain. I never felt this bad before the sleep test! It amazes me that even after 8 hours of CPAP-free sleep I still feel rotten like I never have before. It will be interesting to see how I feel tomorrow after another night of no CPAP.

The HoseBuddy arrives Wednesday and I will give that a try first while wearing the chinstrap again.

Also considering sleeping in a recliner instead of a bed to restrict my tossing and turning, though that is not appealing as a long term solution. I am just curious what it might feel like to actually sleep through the night with equipment on.

Try using the equipment while you're sleeping in the recliner.
It's been frequently recommended for new users trying to acclimate to their therapy.


Den

.

don't - it's absolutely miserable for almost everyone at the beginning - you'll swear it will never work for you and is absolutely impossible - it will work if you are determined to make it work and in 6 months you won't be able to sleep without it - it will not feel right - sounds like you've definitely got the wrong machine - as someone else has written, it seems like you need the top end machines that are needed for centrals but also work great for everything else ( i think 90% of the problems people have with cpap would go away if everyone just had these machines - i only found out it was the machine i needed after failing at every other type of machine out there ). My machine is an S9 Vpap adapt from resmed and it's several years old but it works great - every night i sleep 7-8 hrs, never wake up and 9/10 nights have an ahi of 0.0 - a "bad" night is 0.6.
hang in there it will work if you are determined to make it work.

You are absolutely correct that CPAP introduces elements to your sleep that weren't there before, and now you have to work through to get to sleep. Machine noises, air pressure, the feel of the mask, air leaks, hose management, etc -- until your mind and body accept these as part of your new normal, you may have trouble getting a good deep sleep.

That's why so much of the challenge is the mental attitude. You are not going to bring this stuff home and in less than a week be "back to normal". Normal is a setting on your dryer! In life, we just get to deal with what it - time spent wishing things were better without expending the energy to embrace them and work with them is simply time wasted.

Ed

I used the same mask you have. If you want to try a nasal mask, instead of pillows, you can order the nasal piece that goes with the Swift FX Nano. It attaches to the same headgear that the Swift FX pillow mask uses. I'm a side sleeper, and move all over the place, all night long. I found that the Nano nosepiece stays in place much better than the pillows.

Also, for improved comfort, look at a http://www.snugglehose.com. It makes the long hose feel like part of your blankets, instead of hard plastic. The one with the zipper is best for getting it on and off the hose.
Another improvement for your comfort will be mask liners and strap pads. Look at http://www.padacheek.com. They have liners and strap pads for the Swift FX and Swift FX Nano. You won't feel like you have plastic parts on your head.

Been sixteen months or so since I posted here. Didn't start to feel any better till after about 10 months of treatment and after the combination of the Hose Buddy and the Aloha mask got the hose out of my bed and over my head. Now I think I know why it took so long to stop feeling tired even after that.

White Matter Integrity in Obstructive Sleep Apnea before and after Treatment

“Results in pre-treatment OSA patients showed impairments in most cognitive areas, mood and sleepiness that were associated with diffuse reduction of WM fiber integrity reflected by diminished fractional anisotropy (FA) and mean diffusivity (MD) in multiple brain areas. After 3 months of CPAP, only limited changes of WM were found. However, over the course of 12 months CPAP treatment, an almost complete reversal of WM abnormalities in all the affected regions was observed in patients who were compliant with treatment. Significant improvements involving memory, attention, and executive-functioning paralleled WM changes after treatment.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153061/

So it sounds like the beneficial effects can take a year to show up. That was true in my case.

Unfortunately I have just been diagnosed with polycythemia. My hematologist thinks it is caused by sleep apnea-induced hypoxia. Since I have been on APAP for 18 months and my AHI is always under 5, I find that hard to believe; it seems likely the cause is something more sinister. In the coming weeks I hope to find out.

She also said the bone marrow cells can "learn" to stop overproducing red blood cells if you get them down to the correct level (by phlebotomy; I have to get a pint vampired out every two weeks for the next year or more). It sounds like they can overproduce in situations of hypoxia and then stay elevated even during normoxia unless you use phlebotomy to reset the levels. The only problem here is my hemoglobin levels were normal last summer and now are high, which would mean they went up after five months of pap treatment. Doesn't sound right.

I am not sure if my AHI numbers are accurate since I use nasal pillows but sometimes wake up with incredible dry mouth or even with air blasting out of my mouth. I have to wonder if AHI is accurate if someone uses nasal pillows but sometimes has a mouth leak. I have tried the Amara View and the Hybrid masks to cover my mouth but I could not even get close to a good seal on either one. Mouth taping makes my AHI go up, which seems odd if the problem is the occasional mouth leak.

I mostly just wanted to post that article. But if anyone has any info on how reliable AHI numbers are for nasal pillow use if you might be mouth breathing/having mouth leaks, I'd be interested to know.

tisket wrote: ↑

Thu Aug 30, 2018 5:24 am

if anyone has any info on how reliable AHI numbers are for nasal pillow use if you might be mouth breathing/having mouth leaks, I'd be interested to know.

Usually fairly accurate unless someone is spending large parts of the night with huge amounts of mouth breathing causing massive therapy pressure loss to the point the machine can't sense or record any events that might be happening.
Takes a lot of large leak to cause the machine to not record something.

Not all mouth breathing ends up equaling massive pressure loss though.
Dry mouth can happen with as little as 5 minutes of mouth breathing...so dry mouth doesn't mean a person is mouth breathing for the entire night anyway.
To get an idea how bad you might be mouth breathing/leaking...need to see the software reports.
SleepyHead works great with Respironics equipment (which you show in your profile) .....use it and post a typical report so we can see what that leak line is doing.

You can find it here
https://sleep.tnet.com/equipment

and for how to post the images so we can see what you are seeing...and examples of what we like to see (don't need all those graphs)..see this thread.
viewtopic/t158560/How-to-post-images-for-review.html

tisket wrote: ↑

Thu Aug 30, 2018 5:24 am

White Matter Integrity in Obstructive Sleep Apnea before and after Treatment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153061/

So it sounds like the beneficial effects can take a year to show up.

Very interesting. Thanks for the info. Keep on the good track and the new Re: Getting ...

tisket wrote: ↑

Thu Aug 30, 2018 5:24 am

Unfortunately I have just been diagnosed with polycythemia. My hematologist thinks it is caused by sleep apnea-induced hypoxia. Since I have been on APAP for 18 months and my AHI is always under 5, I find that hard to believe; it seems likely the cause is something more sinister. In the coming weeks I hope to find out.

She also said the bone marrow cells can "learn" to stop overproducing red blood cells if you get them down to the correct level (by phlebotomy; I have to get a pint vampired out every two weeks for the next year or more). It sounds like they can overproduce in situations of hypoxia and then stay elevated even during normoxia unless you use phlebotomy to reset the levels. The only problem here is my hemoglobin levels were normal last summer and now are high, which would mean they went up after five months of pap treatment. Doesn't sound right.

I had a polycythemia. Discovered in 1994 they never found out why. Blood tests OK, oxygen binding OK, Fe OK, not working in a high CO2 environment... I like to be in the mountains but with that level of red blood cells the doctor sad it would be OK if I was living at 4'000 m (13'000 ft). Well this was not the case. I live at a lousy 400 m
So I got the phlebotomy treatment (a pint every month) and they just threw it away ... Not even was I allowed to make my own sausages ...
In 1999 I moved to Denmark and needed some one for the monthly donation. No way to find one. Ended up to have to recheck my blood which turned out to be just normal.... And now they accept my donation and don't throw it away

Interesting esel. I hope mine ends up as benign.

Thanks Pugsy for taking the time. I am including graphs for the last three days since they varied quite a bit. Monday night I was trying to get a seal with the Amara View full face mask, and gave up; that is the stuff you see early in the evening. When I went to bed I used the Aloha nasal pillow mask (which I also used for Tuesday and Wednesday). My AHI is usually 2 or 3 but for some reason it took me several nights to recover from my weekend experimentation with the Amara View (my AHI was over 5 with that).

They are in order Mon-Tues-Wed.

For some reason Sleepyhead is saying my humidifier is not attached and there is no heated tubing. Neither is true.

My machine reported 0% large leak on each night. Looking at these graphs, I have to wonder.

Anyway here they are

I must say I am mystified by why one night says "Leak rate 4.0, total leaks 32" while the other two nights say 0 and 0 for that. I don't understand this leak thing. How can an air rate of 90 not be a large leak?

You need to understand how your machine reports leaks.
You get 2 numbers in SleepyHead....total leak (top leak line on the graph) which is the mask's expected vent/intentional leak PLUS any excess leak. The bottom line on the leak graph is an approximation of excess only leak.

Look at the Events graph...see that LL up there near the top? That's large leak and if you ventured into large leak territory there would be a flag up there.
I don't see any flags on those 2 reports...you didn't ever hit large leak territory.

Now the statistics side where you see the % of time over the red line threshold...you didn't have any time over the threshold because there are no large leak flags. The % over red line statistic is an error because SleepyHead defaults to the ResMed red line threshold of 24 L/min and that's excess leak only because that is how ResMed machines report leaks.
Respironics machines don't report excess only leaks...they report total leak which includes the vent rate. All masks have vent rates and they will vary a bit with the type of mask and also the vent rate varies with the pressure used...more pressure means a higher vent rate.

Let's fix SleepyHead so that the % over red line threshold is starting with a more accurate number for its calculations for your machine.
Go to Preferences...then CPAP tab...on the right side change the 24 L/min red line threshold to something closer to where your red line would be. We can't get it exact because the red line varies with pressure and mask used but we can get it close.
Change it to 70 L/min...that's a nice conservative number and I actually think large leak territory is probably going to start up around 80 to 90 L/min total leak...but it hurts nothing to start with conservative.

tisket wrote: ↑

Thu Aug 30, 2018 6:29 pm

"Leak rate 4.0, total leaks 32" while the other two nights say 0 and 0 for that. I don't understand this leak thing. How can an air rate of 90 not be a large leak?

One number is total leak..remember that vent rate is included.
the other smaller number is excess leak only.

And yeah...someone could easily have a 90 L/min total leak reported and it not be large leak territory. It all depends on the type of mask used and the pressure used.
Trust your machine....it trumps the SH statistics...look at the event graph...if you don't see anything flagged in that LL Line...you had no large leaks.

So in terms of leak management...you don't have a problem and your AHI is definitely accurate.
Now if those small leaks wake you up then you would want to fix them because they are disturbing your sleep but in terms of therapy effectiveness your machine can easily compensate for these little leaks.

Ignore the SH reporting the humidifier is disconnected and no heated tube thing....a known bug in SH settings reporting area that was never fixed.

Are leaks waking you up?

Thank you for the analysis and the information.

I was confused by the "4" and "32" numbers because I thought it was saying that was for the entire night, I didn't realize that was just where the line cursor happened to be on the graph. Whoops.

I changed the flag threshold from 24 to 70 as you suggested but it didn't (despite a note about recalculations being complete) change any of the stats. I then tried changing it to 95 and it still didn't change. So I guess it only does this calculation on import. Or maybe it is being prevented by the settings to the left?

Earlier I had put in the values I found in my Aloha manual. I thought Sleepyhead would use these for calculating large leaks. Does that user defined field that I put 70 into, override that? Or vice versa? See pic.



I guess I am surprised that the leak rate of 75 on Tuesday was not being reported as a large leak. That seems pretty large to me (larger than the ResMed 24 + Aloha vent rate anyway). Are PR S1 machines that different? If the Aloha vent rate is around 30 at pressure 10, then that means even a 45 unintentional leak is still not being flagged - almost twice as high as ResMed (24) would need to flag it, if I understand correctly.

In any case it is good to know I can trust these AHI numbers. My concern is to make sure my apnea is really being treated, since the hematologist thinks my polycythemia is a result of sleep apnea, and that makes no sense to me if I have been treating it successfully. If these numbers are accurate then I can stop experimenting with full face masks.

As for the leaks - normally they don't wake me up anymore. Once in a while I have a bad night and end up battling the equipment, usually after I have washed the headgear and it has shrunk or otherwise been changed by the experience. But for the most part I sleep pretty well these days.

Respironics machines have always been more generous in the amount of excess leak that they can handle compared to the ResMed machines.

But to be honest...I think that 24 L/min line in the sand they use across the board is extremely conservative and in real life the machine won't really start getting into trouble sensing, flagging and recording data until over 35 L/min and even then it's a barely into trouble thing. I base this opinion on years of experience using both brands and watching the data and knowing what to expect.

When I used a Respironics machine I never got a large leak flag but with ResMed it's rare that I don't get at least a quick little flag and sometimes a lot of flags.
It's just the difference in machines and what the brand says it can compensate for. Trust your machine.

I don't know why the red line statistics didn't change after the recalculations...they should have. I have the same stuff on the left that you do and mine changed.
i have both a Respironics and ResMed machine. Since I use the ResMed as my primary machine I just use the 24 L/min default and shrug my shoulders when the statistics tell me I had massive leaks when I am using the Respironics and there's not one LL flag on the events graph. I thought it recalculated but maybe it didn't..been a while since I did the recalculate thing.

You can even turn that statistic off if you wish...just rely on the Events graph itself because it's the one that is the most important anyway.
Watch the reports from now on and see if that statistic still wants to tell you how bad your leaks were when you aren't having any at all.

Do remember that SleepyHead is Beta software and you know with Beta software it's sometimes buggy and sometimes doesn't work like we think it should.
You can also create a new user profile and import again with the new Preferences red line setting changed and see what it reports.

You could use Encore Pro but man is it ever a PITA POS software to both install and use. And it's a bit buggy too.
I don't recommend using it unless there is no choice for some reason or other. Just too difficult to manage for most people.

Oh, forgot to mention that don't assume that ResMed's line in the sand of 24 L/min excess leak is the gospel.
ResMed is the only brand that reports only excess leak. Every other brand out there does total leak and they all have very generous allowance for leaks before the large leak flag happens.
F & P uses 60 L/min total leak...DeVilbiss uses something up around 90 L/min total leak.
ResMed is the only one with excess only as the reported leak and an extremely conservative number at that.

Thanks again. I will sleep better tonight.